Kindness in the name of Nolan

INDIAN TRAIL – When Chris and Rebekah Perez were expecting twin boys in 2012, they received news no parent wants to hear – there was something wrong with one of the babies.

The couple found out during a 20-week ultrasound that, while one of the babies was healthy, the other showed signs of a congenital heart defect called hypoplastic left heart syndrome, a condition where the left side of the heart is underdeveloped.

“I remember just being completely crushed by it,” Chris Perez said. “All I wanted was some healthy children – now I didn’t know what to expect.”

The twins, Grant and Nolan, were born on Dec. 10, 2012. While Grant was able to go home to be with his parents and older brother, Hudson, Nolan remained at Levine Children’s Hospital for nine weeks and underwent the first of three open-heart surgeries at seven days old. His second surgery took place in summer 2013, and he’ll undergo the final surgery in about two years.

The road hasn’t been easy for the Indian Trail family, but Chris Perez is turning a difficult experience into a way to give back to others while also raising awareness of congenital heart defects – through completing 32 acts of kindness by his 32nd birthday.

“Looking back at everything I’ve been through, I really want to turn my experience into a way to help others,” Perez said.

Perez plans to stretch the good deeds over the course of four days, starting Feb. 14 and ending on his birthday, Feb. 17. For each act of kindness, he also intends to distribute information about congenital heart defects to educate people about what statistics show are the most common birth defects and the leading cause of birth-defect-related deaths worldwide, he said.

“It’s a great start … for people to ask more questions and really look into the number of kids that have these defects,” Perez said.

Perez plans to kick off his efforts by taking bagels to the cardiovascular intensive care unit at Levine Children’s Hospital – a unit he said did a lot for his family while Nolan was in the hospital.

“They went above and beyond, more than just medical care,” he said. “What better way to kick this off than starting there?”

Other plans include taking some clothes to Second Chance Boutique (which benefits Turning Point Domestic Violence Shelter), donating food to Union County Crisis Assistance Ministry and the Union County Community Shelter, donating items to With Love From Jesus, reading a story to a class at Poplin Elementary, buying lunch or a Starbucks coffee to someone in line behind him, giving baby formula to the HELP Crisis Pregnancy Center and other good deeds.

Perez also is organizing condensed information about congenital heart defects into small cards or single sheets of paper he’ll give to each recipient, along with a brief explanation of what he’s doing and why he’s doing it – something he says is critical to his mission.

“I’m not doing this so people can say, ‘Look at Chris, what a great guy,’” he said. “…I hope people will be encouraged to do kind things for each other. It could make a huge difference, to find people in the world who are hurting and relate to them.”

But his mission is about more than connecting with people and spreading awareness of congenital heart defects – it’s also a way to honor his son, as well as other children born with congenital heart defects. Nolan has made a lot of progress since his surgeries, Perez said. He’s completely off his medication and has been undergoing physical therapy and swallow therapy with hopes of eventually removing his feeding tube.

“My son is 100 percent my hero,” Perez said. “(I’m doing this) for him and the kids in the hospital now, waiting to go through surgery, or parents waiting (for their children) to go through that, who’ve gotten the same news I got, and for the parents whose kids aren’t here anymore so those kids are not forgotten.”

Perez and his wife strive to connect with other “heart parents,” or parents of children with congenital heart defects. Perez launched a blog in October 2013, hoping to connect with any “heart dads” going through the same things he’s gone
through.

“Guys still have hard times with it,” he said. “It’s the worst and toughest thing I’ve ever been through. My son is 13 months old, and he’s my hero – he’s done what I could never do as a grown man. I want to kind of share my experience, and if I can reach one person and show them they’re not the only one going through this, I feel like I’ve done my job.”

Read more about Nolan’s story at the Support Team Nolan Facebook page, www.facebook.com/SupportTeamNolan, or Perez’s blog, hlhsdad.wordpress.com.